Announcement

Collapse
No announcement yet.

Limbo Land/Suspected MS (?) Questions on MRI orders

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Limbo Land/Suspected MS (?) Questions on MRI orders

    Hello all!
    I am a 33 yr old female in 'Limbo Land' I suppose. I have been experiencing issues since January and today was my long awaited neurology appointment. It took me this long to get here because I started at a hand specialist thinking I had carpal tunnel. What began for me as hand tingling & pain has progressed and I've had SO many symptoms the past 6 months: tingling, itching episodes, weak arm, trouble walking, tire easily, ringing ears (only happened twice), shooting pains in toes and nail beds. My symptoms are random and they come and go. I will have several "bad days" in a row then a handful of good ones. I have been ruled out for: Diabetes, thyroid, Lupus, RA, B12 deficiency, Carpal tunnel, and probably some others I'm forgetting. I've done so many tests and bloodwork - it's exhausting!

    Today, I was told my neuro exam was "normal". Still, she called for a brain and cervical spinal cord MRI.

    I have a few questions, starting with -
    * on the imaging orders, there was a "Diagnosis" line - neurologist wrote "parathesia of skin; weakness; demyelinating disease of the central nervous system". Does this mean she is/has diagnosed me with a demyelination disease? I have googled and know that MS isn't the only one, but in our consult she didn't mention anything with certainty, so this worried me when I read it on the imaging orders.


    * does anyone have familiarity with the MRI process, she called for "w/out contrast". I have read mixed reviews. Is there a reason for this or should I be worried I should have contrast?


    * what is the standard process for getting my scan results? I know you are supposed to get them from the dr. who ordered them (right?) and not from the imaging place. Well, my issue with that is, this neurologist I chose to see is VERY hard to get in to. I had to set my follow up appt. for OCTOBER 2. She is booked until then! It's crazy. I imagine I'll have an MRI completed before the middle of August, then wait 6 more weeks to hear about what they mean. Very frustrating, how should I handle or should I try to get them before somehow?


    * today, at my appt, was a "good day for me and I was feeling good. Would you pass a neuro exam on a good day and fail on a bad day? Just wondering if that would matter. My balance, for example, isn't off 100% of the time, only certain times.

    Anyways, not sure if this makes sense or if anyone has thoughts. I'd love to hear any input or your experiences in this area. Thank you for reading my long post. I am definitely anxious about this whole ordeal and would just like to get some answers so that I can move on with a diagnosis of some sort, and a treatment plan to feel better!

    best wishes

    #2
    Originally posted by mewee320 View Post
    I have a few questions, starting with -
    * on the imaging orders, there was a "Diagnosis" line - neurologist wrote "parathesia of skin; weakness; demyelinating disease of the central nervous system". Does this mean she is/has diagnosed me with a demyelination disease?
    Not necessarily. When I got my first MRI, that diagnosis line said MS, stroke, brain tumor - all conditions to rule out or to look for. I'm pretty sure the neuro wrote on that line what could be a possible dx from your symptoms, what to look for on your MRI (signs of demyelination) and also looking to rule out conditions.

    Originally posted by mewee320 View Post
    * does anyone have familiarity with the MRI process, she called for "w/out contrast". I have read mixed reviews. Is there a reason for this or should I be worried I should have contrast?
    Without contrast, lesions may show up on MRI images. With the contrast dye, lesions that are active with inflammation (new lesions) will show up on the MRI images.

    Originally posted by mewee320 View Post
    * what is the standard process for getting my scan results? I know you are supposed to get them from the dr. who ordered them (right?) and not from the imaging place.
    I would call your neurologist's office and ask them what their protocol is for this.

    Originally posted by mewee320 View Post
    * today, at my appt, was a "good day for me and I was feeling good. Would you pass a neuro exam on a good day and fail on a bad day? Just wondering if that would matter. My balance, for example, isn't off 100% of the time, only certain times.
    There are subtle abnormalities that could be present at a neurological exam, even on your good days, such as overactive reflexes, eye abnormalities such as swollen optic nerve, pupil response to light, Babinski reflex (toes curl upward and other toes fan out when sole of foot is stroked), sensitivity to touch, etc.

    Originally posted by mewee320 View Post
    Anyways, not sure if this makes sense or if anyone has thoughts. I'd love to hear any input or your experiences in this area. Thank you for reading my long post. I am definitely anxious about this whole ordeal and would just like to get some answers so that I can move on with a diagnosis of some sort, and a treatment plan to feel better!
    Waiting for test results and diagnosis is difficult, frustrating, and anxiety provoking! But being patient and taking care of yourself is about all that can be done at this time.

    If you would like to learn more about MRI, here is some info from the National MS Society magazine Momentum:

    http://www.momentummagazineonline.co...stifying-mris/

    And here is info about the neurological exam:

    https://multiplesclerosis.net/diagno...ological-exam/

    Feel free to ask anymore questions and we'll be glad to help, if we can!

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Thank you for comfort

      Originally posted by KoKo View Post
      Not necessarily. When I got my first MRI, that diagnosis line said MS, stroke, brain tumor - all conditions to rule out or to look for. I'm pretty sure the neuro wrote on that line what could be a possible dx from your symptoms, what to look for on your MRI (signs of demyelination) and also looking to rule out conditions.Thank you, this is great to know! I wasn't sure because that's not how I typically define the word "diagnosis". LOL. Just being anxious bc of all this. Without contrast, lesions may show up on MRI images. With the contrast dye, lesions that are active with inflammation (new lesions) will show up on the MRI images.Hmm.. seems like with contrast would be better then. Odd they don't just call for that one right away. I think the contrast is dangerous for you. I would call your neurologist's office and ask them what their protocol is for this.I will, thanks. There are subtle abnormalities that could be present at a neurological exam, even on your good days, such as overactive reflexes, eye abnormalities such as swollen optic nerve, pupil response to light, Babinski reflex (toes curl upward and other toes fan out when sole of foot is stroked), sensitivity to touch, etc. Waiting for test results and diagnosis is difficult, frustrating, and anxiety provoking! But being patient and taking care of yourself is about all that can be done at this time.If you would like to learn more about MRI, here is some info from the National MS Society magazine Momentum:http://www.momentummagazineonline.co...stifying-mris/And here is info about the neurological exam:https://multiplesclerosis.net/diagno...ological-exam/Feel free to ask anymore questions and we'll be glad to help, if we can!Take Care
      Thank you so much for your time in writing me back and all the info.

      Comment


        #4
        mewee320

        I know what you mean about the common use of the word diagnosis, and then the way it is used on an MRI order. The neuro has to give the purpose or reason for the MRI scan on the order - what he's looking for, or what he's looking to rule out.

        Also, I'm wondering now if "w/out" contrast is the abbreviation for "with and without" contrast. If I can find that out, I'll let you know.

        During my first MRI, they scanned my brain and cervical spine without the contrast dye first, took me out of the scanner, injected the contrast dye, and then took more pictures.

        And, you're welcome! Don't hesitate to ask anything else, or share what's going on.

        Take Care
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment

        Working...
        X